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Following the recent NDIS cover in the media, there are several issues I would like to talk about with you as the Minister responsible for the coming NDIS in the ACT. I am generally supportive of the coming NDIS but I have serious concerns about the roll out. In particular, I am concerned that the transition to the NDIS may not be well planned and that several crucial services that affect people with autism spectrum disorder (ASD) have or will fall through the cracks.

A Queanbeyan mother is grateful her autistic son has been allowed bus travel to school after a four-year battle with the NSW Education Department but infuriated it took going to the media to get a result.

Janet Smith told her story to The Canberra Times earlier this month out of desperation when she was knocked back four times by the department after years of battling the bureaucracy.

Mrs Smith and her husband Nick have two profoundly autistic sons, both of whom attend the Malkara School, across the border in Canberra.

The national disability insurance scheme will cover ''most'' people with autism and could pay the full cost of early intervention programs, Disability Reform Minister Jenny Macklin has declared in the latest clue as to what the $22 billion-a-year scheme will cover.

The Australian Capital Territory (ACT) may be the only place in the world where the diagnosis rate (prevalence) for autism spectrum disorders (ASD) in young children is dropping. SOfASD produced a monograph raising concerns that the autism/ASD diagnosis rate for children under 10 years of age is falling in the ACT when the rate continues to rise in the rest of the country. Current data from a range of sources shows that the number of ASD diagnoses in the ACT are well below the numbers observed elsewhere in Australia.

Again, the ACT Government is calling for submissions to its coming budget (see http://www.budgetconsultation.act.gov.au/).
So far, budget submissions from the autism/ASD community have been wasted effort. Recent budget submissions from the autism/ASD community can be downloaded from the links below.

In his Chronicle column (and online, click here), Andrew Leigh highlighted ACT Labor's (non-specific) promise to increase early intervention for children with autism in the ACT's Autism Intervention Units run by the Education Department. Andrew wrote:

For children with autism spectrum disorder, ACT Labor has promised more hours for early intervention.

The submission suggests that research funding has a greater chance of having more impact when it is addresses health issues with higher "burden of disease and injury". It mentions that autism has a high burden for children (highest for boys), based on the available evidence ... yet very little of Australia's health and medical research funding is spent on autism.

The Chronicle reports (Autism school pledged by Naomi Fallon, 2/10/2012) that ACT Labor criticised the Liberal's election promise of “a school for children with autism [to] fulfil an unmet need in the ACT education system”.

The Liberals say families affected by ASD are “crying out for more support”. SOfASD agrees.

Education Minister, Chris Burke MLA, complains, “parents could still expect to pay very high fees”.